Post-stroke Health & Well-being - PATIENT SURVEY (General Stroke)

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Consent Form for people affected by stroke*(*General stroke)
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Who is conducting this research?
We are clinicians and researchers who are studying ways to improve the care of people with stroke. Our names are: A/Prof Beata Bajorek (Clinical Academic Pharmacist, UTS), Dr Andrew Bivard (Neuroscientist, University of Melbourne), and Prof Chris Levi (Stroke Specialist - Hunter Medical Research Institute and Director, Sydney Partnership for Health, Education, Research & Enterprise).

What is the research study about?
The purpose of the online survey in this study is to find out about the health and well-being of people who have had a stroke, and what types of treatment and care they have sought and received. We are interested in finding out how healthy and well you feel after your stroke, and to what extent the stroke has impacted on your day-to-day life. We are especially looking to find out how many people are affected by fatigue or mood changes after their stroke.

You have been invited to participate in this Australia-wide study because you are person who has experienced a stroke, either recently or in the past, whether or not you have experienced any long-lasting effects on your health. The information in this survey will help us to better understand the health care needs of people affected by stroke. You will have seen a link to this survey advertised on a stroke support website or forum.

Inclusion/Exclusion Criteria
This survey may be completed by anyone who:

- has had a stroke (recently or any time in the past), whether or not with ongoing health issues
- lives in Australia
- can read and respond to questions in English
- has access to the internet to complete the survey online*

*You may ask your carer or a family member to assist you in accessing or completing the online survey, if needed.
*You may request that a paper copy of the survey be mailed to you (with a postage-paid envelope) if preferred.

Do I have to take part in this research study?
Participation in this study is voluntary. You do not have to answer any questions. It is completely up to you whether or not you decide to take part. You can change your mind at any time and stop completing the surveys without consequences.

If you decide to participate, we will invite you to answer a series of questions (some are simple answers, others require more detail) - this will take about 20-30 minutes of your time. You can take as long as you need to answer the questions. There are no 'right' or 'wrong' answers - you just simply answer the questions based on your experience.

The questions will ask about your general health and wellbeing, any post-stroke effects on your health, and whether you have any particular challenges with your health. The questions will also assess certain aspects of your health in more depth to help us understand the extent to which the stroke has impacted on your day-to-day life.

You can change your mind at any time and stop completing the survey without consequences.

Are there any risks/inconvenience?
We don't expect this survey to cause any harm or discomfort. We hope that answering the questions will be a positive experience for you, where you can provide information to help us better understand the health care needs of people affected by stroke. But, we do understand that it may be uncomfortable, emotional or tiring at times to think about any effects on your health.

If you become upset or worried about your health at any time whilst completing the survey, you may stop answering the questions. We recommend that you followup on any concerns by contacting:

• your local doctor or other health professional (practice nurse, pharmacist) to discuss these issues
• your local hospital's stroke clinic or rehabilitation service
• a counsellor or psychologist in your local area to work through your concerns
• an accessible, anonymous support service such as:
o Lifeline (Telephone 13 11 14)
o Beyond Blue (Telephone 1399 22 46 36)
• the National Stroke Foundation - https://strokefoundation.org.au/ for more information

You may also anonymously contact Mrs Lichin Lim [Research Assistant] on (02) 9514 9295 or poststrokestudy@uts.edu.au who can provide information about counselling and support services to assist with you, if needed.

We also recognise that taking part in this study, and giving up your time to be interviewed, may be an inconvenience.

What will happen to information about me?
Access to the online survey is via a secure online platform at the following weblink: https://redcap.research.uts.edu.au/surveys/?s=TYLHXNMA8T

By answering the survey questions, you consent to the research team collecting and using information about you for this study. All of this information will be treated confidentially. We will not collect or record any personally identifying information from you. All of the survey answers will be stored in a secure, password-protected, online data storage platform. Only the Research Assistant and the lead researcher (Beata Bajorek) will have access to the answers to the survey questions, and these will only be used for the purpose of this study.

We plan to present and publish the results from this study at clinical research conferences and at health service planning meetings (e.g., at hospitals, health care facilities). In any presentation or publication, you will not be identified as the survey is anonymous.

Completing the online survey (submitting your answers to the questions) is an indication of your consent.

What if I have concerns or a complaint?
If you have concerns about the research that you think the researchers can help you with, please feel free to contact the Research Assistant - Mrs Lichin Lim - on (02) 9514 9295 or poststrokestudy@uts.edu.au OR A/Prof Beata Bajorek on TEL: (02) 9514-8301.

If you would like to talk to someone who is not connected with the research, you may contact the Research Ethics Officer on 02 9514 9772 or Research.ethics@uts.edu.au and quote this number - ETH19-3698.

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